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Beth L... First the easy part: sac·cade (sà-käd¹, se-) noun A rapid intermittent eye movement, as that which occurs when the eyes fix on one point after another in the visual field. — sac·cad¹ic adjective Since I have this problem I'll tell ya what the opthamologist said. Its' tracking out of one eye, than the other, back to the original, the other, back and forth and back and forth at near-instantaneous speeds, with the NON-tracking eye seeing nothing in the moment it's not tracking. In other words, one sees out of only one eye at a time when in this visual mode. The mind compensates for this and those suffering from the problem don't consciously know they have it. Things appear fairly normal visually to us. However, its' physically and mentally a BIG strain on the brain when this is going on.... a physically tiring strain. What causes this condition is the PD affecting the eye muscles, non-visibly to any one looking at ya, so that the eyes either cross or pull outward <wall-eyed> A prism added to your glasses (presuming if you're close to 30-ish, like so many of the rest of us you're wearing bifocals or have reading glasses) should offer you some relief. There is information about that in the PD achieves. As for the rest of your message, Joy, you might as well have been writing my own Parkie history, except that I'm left-handed and the PD started and stayed on my right side (thank God for small favors) for the first 20 years. This past year it reared it's ugly head on my left side... tho it's tolerable at this time. I can still hear my original neuro 6 years ago at my last visit to his office calling me his "star patient," (I was also his youngest patient by about a hundred years, as I was then in my late 40s) as I sat there in his office in utter frustration because while I had no visible tremor, HE was telling me I LOOKED great and had no visible tremor. I"D sit there saying how awful I felt INSIDE, that my mind had steadily but imperceptibly slipped, my visual depth perception was shot, I was woodenly stiff (everywhere but in his office!), had difficulty concentrating on more than one or two tasks at a time, fell asleep siting up while talking to friends, didn't' sleep at nite, and on and on. I said 'Help me, please." The neuro became ANGRY with me telling me I wasn't the "fighter" he thought I'd been... said that it was WAY too soon to give me any drugs (too soon? I'd than had the disease for a dozen years!), AND if he put me on drugs, I'd no longer be his "star patient." I pretty much said "FU*K that 'star patient" garbage," up and left his office and began doing some heavy-duty PD research of my own. Decided I needed Sinemet, went to my GP and told him what was going on within me and that it was time I began treatment with drugs He wrote me a script for Sinemet after looking it up in the PDR (Physician's Desk Reference) 'cause he had no prior knowledge of what the drug did for the PD patient, nor in all his years of practice had he treated a Parkie. It was a learning experience for both of us. Thereafter, I went to the GP once a year for a checkup and a PD "review" I(with me telling him when I needed drug adjustments) until I discovered Dr. Iacono who did my Pallidotomy, in Oct. or '94. Beth... thank you for sharing what was obviously painful to write. You have opened wide a door into my own life-with-PD which I'd long felt WAS there, but had been assured by the medical community it wasn't. I felt like Columbus sailing uncharted seas... looking for a land which I intuitively knew was there but had no proof of it's existence. You verified it's existence and validated what I'd been experiencing with PD. Barb Mallut "Lil_Honey" on the PD Chat [log in to unmask] ---------- From: PARKINSN: Parkinson's Disease - Information Exchange Network on behalf of elizabeth leslie Sent: Thursday, January 30, 1997 3:34 AM To: Multiple recipients of list PARKINSN Subject: Neuropsychology/Diagnosis/Treatment Not necessarily in that order. And yes, I do have a lot to say. And I'm hoping for some feedback. It was timely to find in my letterbox when I arrived home from here yesterday a package of journal articles from the psychologist who did my neuropsych assessment in NOvember. So, still pickin' off that damned KLingon (actually on taste I think I prefer Marling's fab fudge, even if it's fattening - but the Klingon, let me assure you, cures a surprise attack of Parkie-style Acute-ADD faster than you can say Ritalin!) ... anyway, I sat down with a pile of papers on cognitive impairment in PD. Just as well I'd skipped lunch and my midday Eldepryl becuse I needed something to keep me awake long enough to get into this stuff I've been waiting for (I cannot get used to living by the clock and medications, however minimal yet). Most interesting to me at this point is the discussion on the difference between people presenting initially with symptoms of bradykinesia and rigidity (I'm one) and those whose primary symptom is tremor (I had/have that too but never when I'm in the neuro's room). >From postings to this list I have noticed that many people presenting with tremor seem to go pretty quickly onto l-dopa. But I can't say I've seen any comparable evidence for those of us with what one PWP calls 'invisible PD' (thanks FRances). It's bad enough that PD is invisible, but to have invisible invisible PD is worse again ... in some ways. So it has begun to seem to me that I - and I don't want to sound paranoid about this - may be a victim of the invisibility of my symptoms as well as the invisibility of the disease itself. Given that most neuros are men who (I think it IS safe to generalise) don't see therefore don't u/s just how frustrating it is to try to hang a doona cover in a strong wind, or put on a pillowcase, or face the myriad frustrations of preparing food etc when one hand, which looks perfectly normal, just won't function, not to mention just how long it takes to accomplish these small tasks, I don't yet see how to get across the full nature and extent of my inabilities when they don't actually go with me to the neuro. Sure I do all the little tests, but they, like neuropsych assessments (IQ tests) say very little about how I function in the world. Whereas a tremor makes itself known by embarrassing both its victim and observers. But I'll move on. What interests me in connection with the neuropsych literature is the link between bradykinesia and bradyphrenia (a term I'd not heard before). I'm going to assume that many people on the list know much more than I do about this, but perhaps usesful just to give the brief definition from Levin et al.(1992) "The term bradyphrenia refers to the slowing of thought and is presumed to be the cognitive analog of bradykinesia' and 'This area is especially difficult to address because tasks that measure speed of processing are frequently confounded with motor demands. Although slowed information processing may exist in patients with PD, it is certainly not well documented.' They briefly discuss whether both slowing of information processing and bradykinesia both reflect similar dopaminergic dysfunction, but nothing conclusive because there were then no studies on the relationship between these features. More interesting still to me, picking my way through this maze, is the finding that 'When tremor is the predominant clinical sign, mental status is usually normal or near normal. Tremor bears no relationship to attention, visual scanning [get that one wrong and it's Klingon all over!], psychomotor speed, visual memory, visuo-spatial processing, or language skills.' 'By contrast, bradykinesia and rigidity are routinely associated with intellectual decline, including impaired verbal fluency, word list learning, verbal and visual memory, constructional praxis, information processing speed, and complex attention.' So, in short, it seems that invisible symptoms come at quite a price. They are accompanied by the likelihood of much greater impairment, yet attract less attention ito treatment than the more visible symptom of tremor. (One neuro has told me that he will not give me l-dopa until I cannot wash/dress myself, make myself a meal, or get out of bed in the morning.) Yet tremor, it seems, because it IS seen, is seen to be more 'worthy' of early treatment. (I know this is simplistic, but I'm trying to u/s it all.) Unfortunately I hadn't thought this through in time for my appt with 3rd neuro on Tues. last when I sought another opinion on treatment. He did say, too, he'd not give l-dopa yet, preferring to give me a dopamine agonist first. But he did add that it is my decision as much as any neurologist's as to when I commence on l-dopa. That's an advance on the previous attitude. I had a noticeable tremor as far back as '84, and in '94 when I began to lose dexterity in my left hand the tremor was bad enough for me to give up using a fork in that hnd because I could no longer guarantee getting the food safely to my mouth. When I changed my diet drastically after diagnosis last September the tremor virtually disappeared. (The naturopath who advised me on diet successfully treats his grandmother for tremor dx as PD, but he now doubts the dx). I experience it now in my left arm at rest and at all sorts of odd times in my left leg. But never in the neuro's rooms! Along with the problems with my left hand since 3 yrs ago, I have all along been fretting about loss of memory and concentration. And even though the neuropsych testing was apparently unremarkable to the neuro, there was quite a discrepancy between verbal and performance levels (performance lower because slower). There are some references to further research on 'improved function on neuropsych tasks with dopaminomimetic [??] treatment [but they] tend to be small and highly selective', according to Mohr et al. (1990). What I want/need to know is if there is anyone here can relate to any of this ito their own experience. In spite - or perhaps because - of being a late starter (I began my u'grad studies at age 42 under quite difficult personal circumstances) I WAS a good student before this all took over. I didn't make stupid mistakes. I was careful, conscientious with a reputation for good hard work. I loved my research, and set myself 'ambitious' goals. Now I find myself saying 'I can't' or 'it's too hard' or 'I just can't be bothered', and I don't recognise myself in that. I find it difficult - painful - to sit for long periods at the computer, but the task before me demandds I spend virtually my whole life here, and i find it hard toface that prospect. Yes Ron, David Hawking is inspiring. So what is it that makes the necessary difference between courage and defeat? I want to think that if it is dopamine I lack and I know how to get it, it iwlll go part of the way in making that difference. But I guess no guarantees. Well, I"ve gone on. But several of you have been good enough to ask me to let you know how the appt. went last Tues. I'd say it went very well on the whole. I am to be assessed by that same neuro and a colleague who 'knows more about PD than anyone else' in these parts, and hopefully I will be directed to a physio with an interest in PD - my left back and shoulder muscles are wasting and ? knotting through lack of mobility on that side and my right hip is often painful ? through compensating for a lazy left leg. At that next assessment I hope to be able to talk through the different approaches to tremor and bradykinesis/rigidity. I would greatly value your responses ... if anyone has reead this far. Thanks Beth. PS Can anyone tell me whwat saccadic eye movements are?